By Katie O’Leary
There is a common phrase thrown around in regards to invisible illnesses.
“You look fine.”
This is a phrase has been the catalyst of so many rage spirals I cannot even keep track. Life is so cruel, unfair, and completely screwed up. But in this game of life, we each have a deck of cards. Playing cards that represent who we are through other people: our families, friends, work, memories, and the significant others who decide to pay or play.
My deck has always felt short. I am missing a Queen of Hearts and a King of Spades. Cards one through ten are spread out all over the world. Too many Jacks have played, and my heart and soul has been ripped to shreds from it. We win over the other cards, through chance, luck, or strategy. And we hope that those cards will stay in our possession, and make our night richer and better than ever. And just when you’re about to cash out, and you think you’ve finally found the winning combination of great luck and being in the right place at the right time – someone plays a joker card. And you lose that great hand. That hand you were going to plan your future with. The hand that was going to give you a tomorrow, provide security, understanding, and maybe even a family.
This is why I hate poker. I lose and lose and I have never understood the rules. The cheat. The “tells.” How I should have known how easy it is to lose your heart and for it to be clubbed into shreds. How my life has never been about winning – only surviving.
I see these people at casinos. Skeletal wisps of people, holding gallon jugs of coins and playing the slots. Alone, dirty, restless, and completely addicted to the idea that love and fortune is only a quarter away. Pain and destruction are also only one choice away.
I believe in fate. But I also believe we have a hand in our fate. I look back at all the decisions that brought me to California, to Keck Hospital. How I finally had health insurance and a good job, one that allowed me to get my hip checked. A job that allowed for a surgery to fix my hip cartilage. A surgery that triggered the end of the life I knew, and into the life I have now: a confusing mess of disorder and disability. The rage so intense, the berserker inside me is like a poisonous monster. I try to keep it locked up and tidied away. Always be positive. Don’t let it get to you. Find a way to cope. Find a way to remember the people in your life who matter. The people who see that monster in your eyes and recognize that it isn’t really you – it’s a growth. A cancerous growth of denial, rage, grief, and the realization that you will never be ok again.
How does anyone move forward with this? There is no drug for self-hatred and for the wandering mind on how your life will never be like anyone else’s. And maybe that’s true for everyone, but the real irony is that I have a nerve disease that will not kill me – but I most likely cannot bear children. And at the same time, a mother figure to me is dying from a nerve disease – and she sacrificed her own life and health to bring her children into the world. She knew what her future was, but she also looked down into the eyes of each of her children and she felt overwhelmed with how much she loved them. The tremors, the shaking, the pain was all worth it for the chance to create something so beautiful and rare: a family.
And then there is me. I’m not like this other mother. I haven’t fallen in love and married my soul mate – someone who has supported me all through the terrifying hospital visits and the loss of function in my leg. And I am scared beyond measure to try again. To try and find someone who will see my life and won’t be terrified of the possibility that I might need them more than other girls. That my problems have appeared in my 20s, and not in my 90s, like we all hope and plan – and that he will have to grow up too soon and take care of me.
But I already played that hand.
All I know is that life is a game of strategy and chance. I may be bad at poker, I may have played my best hand, the one I thought was IT, but I’m just playing the wrong game. I have to stop sacrificing myself and my feelings for people who are supposed to be “adults” in their mid-thirties, who cannot handle serious conflict because their lives were so much luckier.
The only game I am willing to play now, is RISK. I will move forward. I may lose conquests and suffer – but I know what is in front of me now. It may be darker and screwed up, but it’s my board. I’m not willing to lose just yet. I’m not going to retreat. And I’m going to take care of me, and not anyone else.